posted
I had a really severe headache, stiff neck, light sensitivity and fever for over a week.
My LLMD asked me to go to the ER to get checked out for meningitis when I mentioned it. Had blood drawn and also a spinal tap. All tests came out negative for any bacteria or inflammation.
Would Lyme meningitis show anything on blood or spinal fluid tests? Any inflammation or something to indicate what is going on?
I have a follow up today with an ID doctor at this renowned research hospital. They are willing to learn about Lyme- the ER doctor said they are not specialists but would like to find out what is causing the headaches etc and are open to hearing about my Lyme treatment.
This is a great opportunity to take in some information and educate them.
Any specific tests that need to be run on my spinal fluid? Everything done over the weekend was just to make sure I don't have a life-threatening condition. Any specific info I should take in to them?
Posts: 236 | From Washington | Registered: Jul 2008
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posted
Your symptoms are very similar to what I also experienced. Although my stiff neck and fevers had been coming and going for almost 2 months.
I went to the ER and was admitted to the hospital. The initial concern was some type of meningitis - viral, bacterial, or Lyme.
They performed a spinal tap the first day that I was in the hospital but I was also started on IV ceftriaxone (spelling?) as a precaution. They did not find anything of concern in my spinal fluid and nothing grew in the cultures so they ruled out meningitis.
I do not know of the specific tests that would need to be done. All I know is that I was taken off the ceftriaxone after they had the results from my fluids. They had the results in 2-3 days.
I am really curious to see what type of diagnosis you get (if any). I was released from the hospital after 6 nights and told I likely had an unknown virus.
Posts: 24 | From Boston | Registered: Nov 2008
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posted
Thank you Boston and Wimenin. It is always comforting to know that someone else can understand. It is just so confusing to not have any signs of being sick on such serious medical tests.
I will keep you updated Boston in case I found anything that might help you as well.
Posts: 236 | From Washington | Registered: Jul 2008
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Did you feel better after the LP? Do you know what the opening pressure was?
My kids have chronic Lyme and co-infections. They also have pseudo-tumor cerebri. PTC is also called intracranial hypertension. An LP would relieve their headache and neck pain for a few months.
Peggy
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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I totally understand what you are saying about not having anything show up on medical tests.
I was in the hospital with pretty severe symptoms - fevers of up to 104, shaking chills, extreme headaches - and not a single test showed anything. I had a CT, an LP, an echo, and a bone marrow biopsy and nothing (except an enlarged Liver) was out of the ordinary.
All my bone marrow showed was that an inflammatory process was going on in my body. This was of course better news than the alternative but now explanation for low RBC (and hematocrit) and a platlet count of 40 when I was admitted.
I gave so many viles of blood...they ran so many viral and bacterial tests....and tried to culture my blood so many times...NOTHING. I gave urine every day...NOTHING. Its sooooo frustrating!!
I have been feeling so much better since shortly after Thanksgiving. I am still nervous that I will have another "relapse" as my symptoms would go away and come back, go away and come back, etc.
At the end of the day all I have left is a positive Lyme Western Blot that was taken at the beginning of all of this.
I do hope that you get some answers for your problems and please do let me know!
Posts: 24 | From Boston | Registered: Nov 2008
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Thanks for the info on pseudotumor cerebri. I will ask the ID doc when I go in. The headache hasn't been significantly relieved, not even by the percocet they gave me.
I don't know about the opening pressure because they had just given me pain meds, so I was very groggy. I'll have to ask if anything was noted by the doctor.
Any other thoughts? I'm still so worried that I have a rare virus or something else really wrong!
Posts: 236 | From Washington | Registered: Jul 2008
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posted
I spent last xmas in the hospital with lyme meningitis brought on by a LP done a week earlier. I had the same symptoms as you and went to the ER where they did another LP that showed elevated white blood count, elevated protiens and glucose. They tried to culture the CSF, but they were never able to culture any bacteria. Aparently, lyme will not culture in the "normal" way. They stuck with the diagnosis of bacterial meningitis and gave me IV ceftriaxone and vancomycin for 11 days. Had a big herx 5 days into my treatment. There was never any talk of lyme throughout my stay in the hospital, though they did do a lyme test on the CFS that came back negative. I was not diagnosed with lyme until about 6 months later. Bacterial meningitis (not sure about lyme meningitis) is close to 100% fatal without treatment ... your doc made a good call. Good luck educating an ID doc on lyme ...
Posts: 5 | From Virginia | Registered: Jul 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
It would be in the coccoid form or cyst form Lforms check out Dr Macdonalds site
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
From Dr. Burrascano himself:
Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb can be detected in the CSF in just 20% of patients with late disease. Therefore, spinal taps are only performed on patients with pronounced neurological manifestations, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb antigens are present. It is especially important to look for elevated protein and mononuclear cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children.
I had a spinal tap as well at the request of my neurologist duck. It was negative for lyme, but had elevated proteins, as well as a lot of other screwy numbers which can tend to indicate a compromised blood-brain barrier. I had a CDC positive western blot shortly afterward and subsequently also tested positive for babesia WA-1, now known as a babesia Duncani, the stuff of screamer headaches. There were multiple brain lesions. The neurologist took all this as proof positive that I had MS.
They will culture or "grow out" the organisms in your spinal fluid for bacteria. It usually takes a bit for results to come in. Rest assured that lyme (and co-infections) can cause the symptoms you describe, though severe neck stiffness certainly warrants investigation even though it can be caused by lyme as well. It would have been good to send a spinal fluid sample to IGeneX to test but may be too late for that now.
Do you have the test results yet from the spinal tap? Be sure and request a copy when they are available.
I hope you are feeling better soon. Have you been tested for coinfections?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thanks everybody! I still don't have results, but they promised to fax them to my LLMD later today. This is really tough because my LLMD is actually in the hospital himself. His nurse said that he grabbed my chart on the way out the door to the ER!
I was tested for coinfections- babesia positive, and I tested positive for bartonella about 2 years ago, pre- Lyme diagnosis, so I don't know if it is still a factor.
I am going to call the hospital lab and ask if they tested for protein, mononuclear cells or opening pressure.
Even after my time at the ER, the ID doc won't get me in for an appointment until next week. So frustrating!
Posts: 236 | From Washington | Registered: Jul 2008
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posted
I have tested CDC positive for lyme 3 times in 3 years.
I have also had a spinal tap which showed nothing. I don't know why they call it a spinal tap. It's like a chiropractic visit, where you feel good afterward.
If you want to know if you have lyme you need to find a good LLMD and get tested at igenex.
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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